Reminders

Last night, Steve and I attended a town hall meeting about an autism school that could be coming to our area by the fall of this year.  I was excited for this new opportunity because our community lacks a lot of resources that would be helpful for parents with children of autism.  As I sat and listened, a couple of things became clear.  One I was sitting in a room full of desperate parents trying to find anything that will help them with their child.  And secondly, I realized I was not alone.  My thoughts are the same as other families who face this challenge every day.  Some with great esteem, others just trying to make it moment by moment.   Sometimes,  I get myself into this box where I believe that no one understands what I am going though.  How it feels to be hit by your child on a constant basis, or the repetitiveness of their minds.  Then I realized, as I listen to a man talk about his son almost crying, we are all in this together.    There are other moms, dads, and other caregivers that are dealing with the same meltdown, the same behavior, the same diagnosis.

Again today, I was reminded of the up hill climb that Marissa has to face.  As I was sitting in the waiting room, looking at the families wondering what their story is, again I am not alone.   Just because I am following doctors orders to a t,  I am not in control of this situation.  God is.  There are times when I just plea with God to heal her or  just to let me change places with my little girl.   One parent last night said, "haven't I been though the ringer enough?".  Unfortunately, the answer is no.  Marissa is 7.  This is my life.  The reality is that she will always need someone to care for her.  She maybe able to live semi-independently but she will always be dependent on someone.

For the most part, I am optimistic about her life and our situation.  But, at the moment I am feeling rather weary.  I am in a valley preparing to climb our next mountain.  And as everything, there is a season.  This has just been a long season.

1 in 88

April is Autism Awareness Month. The newest statistic is 1 in 88. Staggering. Each child's autism is different than another and often times the child will also be diagnosed with Sensory Processing Disorder and/or Obsessive Compulsive Disorder. Autism is a challenge to many families and I hope that soon we will find a reason that so many children suffer from this disorder. I pray that day will be soon.

Marissa was diagnosed with Autism in October of 2009. I remember the day perfectly. We had two UVA appointments that were back to back. We went to see the Developmental Pediatrician first. He just kind of said it, almost like we should have known. I think in the deep crevices of my mind I knew but I thought that everything we were experiencing with her was part of her chromosome disorder. As we left his office, I felt like I had just gotten run over by a bus. The car was quiet as Steve and I headed to the next appointment. When we got to the hand doctor, he asked us what was wrong, and we told him that we just found that Marissa had autism. He looked at us puzzled and said, "I thought you knew that". As we made our way home, we barely said a word. That night I cried and cried. I just wanted to know why. She had all of these medical problems do we have to add in autism as well. When I was finished with my pity party, I knew that denial of this situation was not going to help us or Marissa. As hard as it was for us to cope with the magnitude of the diagnosis, it wasn't going to change Marissa. Marissa has autism, Marissa is autistic- Marissa is still Marissa. She was born with a genetic make up like no other and as everything her in life we will take it on. Every day is new, nothing is the same and organization is the key. All we can do is manage her environment the best way we can and push her when we feel it is appropriate. We have learned that there are somethings we still need to avoid. Each day might not hold a success, but at least she has lived for another day.

Autism is hard. It is hard on the families, educators and physicians. We have been very fortunate to have people that love, support, encourage and pray for us on a daily basis. Just when I think we can't do this another day, God puts people in our path always at the right time. I hope that next time, you see a mother or father, who has a child with autism, that you say a small prayer for them. Its amazing what prayer does!

Its a Great Day!!!

Seven weeks ago, Marissa's school life was turned upside down. Marissa's trusted companion, Sarah, (aide) had her baby a month early. It was clearly unexpected and Marissa was not prepared. The school had done some work and had hired a new aide for Marissa during Sarah's absence. For the past seven weeks, Marissa has hit, laid in the floor, had to be picked up early, lost recess, several time outs, and extreme melt downs. Marissa lets say, hates change. She just can't cope with a world that is not organized or unpredictable. She also needs someone with a sense of humor to help her divert from her bad behavior. In the midst of all this, she also has had some medical issues that we have had to deal with as well as turning seven. (Side note: For those of you who have seen me recently, know I have cut all my hair off- this is why. It was either cut it or pull it out, I chose to cut it). She has been short tempered, hard to soothe and impulsive. We have tried every type of reward and consequence imaginable, but no luck. She just continued in her pattern of bad behavior.

So yesterday, was "D Day", Ms. Sarah returns. I wasn't sure if I should have gotten to school early to lay out the red carpet, hire a band and gets lots of balloons. We've been counting down this day since, February 10, and yes, you guessed it Marissa had a great day- NO HITTING. In case you missed it, NO HITTING. The first day is 7 weeks. A wonderful, glorious day! Today, was a repeat- NO HITTING. I pray that she will continue to be on this upside in her behavior.

Often times when I write this blog, its about the struggles and challenges of raising a special needs child. We still have those, but I love it when we just have moments of being normal. When she blends in with her peers or we are out in public and she acts like or better then every other child, its times like those I cherish. We don't have many of them but when we do, I want to celebrate, that is why I am sharing this with you. It takes a lot of energy for her to do so good and she has to suppress a lot of her sensory issues to maintain some sense of herself. Every day I become more amazed at her strength and resilience. She is still simply a miracle.

Happy 7th Birthday!

Today, we celebrate Marissa's 7th birthday. It is always a day of mixed emotion. Thankful that she is still with us and we are able to celebrate but yet a day of reflection of where we have been. This time 7 years ago, we began to find out slowly the medical issues that Marissa was facing and had no idea that one day she would be diagnosed with Autism. The next few days I relive those days of her being in the NICU. And as I look over this past year and the challenges she has faced, I can't help but call her my hero.

The other night I was telling Marissa's story to some new friends and they were amazed at how this little girl has so much going on inside. Every day she continues to fight all the odds and remain strong. While we are currently battling some behaviors at school, it is a testament to her strength and resilience.

We don't know what is in store for us this year. I hope that she will begin to manage her OCD a little bit better and stabilize her behaviors at school. I pray that she will remain physically healthy and that all her organs will continue to support her. I pray each day that God will continue to use her to influence others.

Thank you to all of our special friends and family that came to celebrate today. You help Steve and I each day by being apart of our lives. We are truly blessed that you have invested yourselves in Marissa. We hope that she had blessed you as well.

HAPPY BIRTHDAY, MARISSA!

Living with OCD

I have started this blog entry at least a dozen times, but it always seems as if I am whining so I delete it and close up my computer and move on. Most of you may know that I broke my foot two weeks ago. This change in Marissa's routine has pretty much made her come unglued. This is also Marissa's "growing season". (I call it that because she primary grows once a year and it is usually around her birthday). Growing season impacts her in every way from physically growing to emotionally growing. This year it looks as though her OCD (obsessive compulsive disorder) is getting worse and she is becoming less tolerable of outside influences. Lots of fun times.

So I thought, I would share some of Marissa's OCD with you and give you a little peak into our daily lives. Here are Marissa's top five obsessions:

1. When Marissa brushes her teeth at night, she has to wear a costume necklace. Her favorite is a yellow disco ball necklace. This is the only time that she will wear any type of jewelry.

2. Marissa is very particular about her clothes. Those that know her, know that her favorite color is yellow. For the past two weeks, she has wanted to wear something yellow everyday. Thank goodness, yellow is the color of the season. She also does not like jeans. She only wears jeans on Wednesday's because this is therapy day.

3. Each stuffed animal has its place. If its not in the right place, we have a slight melt down. She gets a new stuffed animal it has to take its place in the basket beside her bed and then can slowly work up to possible sleeping with her one day in the bed. Some animals have only gotten to the bed once and now have been banished back to the basket. (Kinda makes you think Toy Story is real- like what is going on in there).

4. Marissa's current obsession are the chuggers from Chuggington. Each chugger has a place. Currently, two are in the "training yard" and are not able to come in the bed. Yes, they sleep with her....in alphabetically order and they all have to look at her and be connected. On a rare occasion they have to be placed upside down, but still in alphabetical order.

5. Marissa is a game show junkie. She loves Family Feud, Wheel of Fortune, Lets Make and Deal and Deal or No Deal. While most children love cartoons, Marissa loves game shows. We have watched the same episode of Family Feud from 1979 at least a 100 times.

Well, I hope you at least got a little bit of a chuckle from this list. Some of her obsessions are so unreal that it is amazing Steve and I have not gone crazy. Living with OCD and Autism is like living in the movie "Fifty First Dates". We do the same thing every day at the same time. No changes, no modifications. This is the way we live our life and its what make Marissa a little more unique then she already is.

Is there a switch?

I guess you could say that today was a hard day of parenting. Frustrating and discouraging. I am beginning to think there is a switch in her brain that turns on and off sweet loving Marissa to a very defiant Marissa. I've tried to change the way I do things but I just can't seem to win for losing. It is such a mystery that there are times, when I fall to the ground in tears, just wish I could figure this all out.

I am one of those people that try to find solutions, look for solving problems that are out of the box. I am an encourager, a cheerleader for my friends that are going through their own trials. But, I can't figure out my daughter. One of my friends today, said "chin up, Amy". That came to me in the middle of the battle tonight.

As much as I am sad right now, I am listening to her as she is in her bed singing, "Silent Night" at the top of her lungs and it brings a smile to my face. I do try to live each day as though it was her last. I always go back in after she calms down and tell her how much I love her and she says she loves me too. And just like that the switch goes back to my sweet loving Marissa.

Gotta love Autism.

Love.... Parenthood

I'm not sure if any of you have ever watched it but there is show called "Parenthood" on NBC. In the show, there is a boy named Max, who has autism. In last night's episode, (that I just watched because there is no way I can stay up past 10), Max calls his mom a "b*****" and begins throwing things at her. She gives him a punishment that he doesn't take so kindly to. As his way of trying to make up, he makes his mom dinner. He "makes"mac-n-cheese, carrots and puts a lot of other things on the table to fill it up. It was a remarkable moment for me as I watched it and I shed a tear as I thought about the future with Marissa. (For those of you who don't know- Marissa only eats pancakes, eggs, hash browns, mac-n-cheese and pizza).

I have a very good friend that is going through a very tough time. As I was writing her today, I was listing off the things that Marissa doesn't have or do. Like, she doesn't have friends, doesn't play with Barbies, and will never be able to have children. I will never be a grandparent and I don't know what her future truly holds for her. I think she could be successful and I want her to be successful but I honestly don't know what she will be capable of. But, as I think about the things that she doesn't do, I often neglect the things she can do. So, as I think of the moment in Parenthood when Max "made" his mom dinner- it reminded me of the special things that Marissa does for me. The simple hug, or the "I love you mom", or even just her smile. They may not happen for days at a time, but when they do, my heart melts. Sometimes is is just the simple things that make life a little sweeter. I hope that as we begin 2012, that each of you will look at the simple things your children do for you. Don't take one minute of it for granted. There are some moms out there that long for the those experiences.

Happy New Year!